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Wednesday, November 21, 2012

A SMALL ACT OF KINDNESS = A LARGE GRATEFUL HEART

Learning to negotiate life with an autistic child takes
time. When Nami was diagnosed with tuberous sclerosis, we knew it was possible
that he would be autistic. The older Nami gets, the more difficult his behavior
becomes. He is no small child, either, reaching 23 lbs. at 6 months and 32 lbs.
at one year. Luckily he has only gained about 10 more lbs. in the last 2 ½
years. Nami’s unpredictable behaviors have increased with his age and weight. When
he gets angry he bangs his head, throws things, punches, hits, and loudly yells
and cries. When these behaviors started increasing, we took him out to public places
less and less because we never knew what would set him off or how others might
react. Nami can only say a couple words, so he can’t tell us how he feels or
what he wants, often resulting in bigger and louder displays of frustration.

Our Chunky Monkey

Leaving the house is a huge chore. In addition to all the
possible medical emergencies we have to plan for, we have think through and
plan for multiple behavioral scenarios, including a quick exit. The preparation
required in order to leave is another reason we don’t go out much. I’m so tired
by the time we leave that I often no longer want to go. When Nami was a baby,
we could take him anywhere. Then when his autistic behaviors started becoming
more apparent, we had to learn how to deal with them. Bad experiences in public
were a rude awakening to the fact that things were drastically changing.

Last year, my husband and my schedules were such that we
were only awake and together a few hours a week. In that time we had to get an
entire week’s worth of errands run or else one of us would have to take Nami
with us. Pressure and exhaustion was constant and we couldn’t always get
everything done. One time I had to run a quick errand into a grocery store. I
just needed to pick up two things…it would be a quick in and out. I had no
choice but to take Nami with me. On our way into the store he started screaming.
I had no idea why he was mad so I couldn’t calm him down. I just thought, “I
only have to get a couple things, so I’ll hurry.” After picking up the second
item, Nami flung himself on the ground and was screaming and kicking. I picked
him up and ran with my screaming child to check out. I wanted to leave the
store but I knew I wouldn’t have another chance to go without Nami for days. As
we arrived to check out, a woman standing in line stepped back and offered me
her place. I gratefully took it and as I was checking out Nami flung himself on
the ground again and continued screaming, kicking and forcefully banging his
head on the tile floor. It seemed like everyone from three lines just stood and
glared at me or gave me looks of horror. I wanted to yell at all of them to
give me a break. I purchased my items and then picked up my screaming child. As
I did so I met eyes with the mother who let me in front of her. She had so much
compassion in her eyes.

I couldn’t get out of the store fast enough. I felt anger,
rage, and frustration. As I was able to distance myself from the situation, I
realized that I had witnessed outbursts in public before which helped my anger
towards the customers dissipate. Even more than that, I was profoundly touched
by the small act of kindness from this mother. This experience shocked us into recognizing
how our lives were changing, but I was so grateful for the empathy of this mother.

.

About Me

I’ve finally decided to put it out there…cathartic for me and possibly helpful to someone else. I have often felt the urge to share our stories but feared being vulnerable. The experiences I share in my blog have had a profound effect on my life and made me who I am today. Even though I never thought I would write a blog (my writing skills are not that great, I use too many of these “!” and these “…”), I feel compelled to try, even if it is only useful to me and possibly my family.